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Wednesday, September 28, 2011

Many people find it very difficult to imagine their parents having sex. As difficult as that may seem, it is probably even harder to imagine their grandparents being sexual. This is just one example of the complexities of sexuality. Most depictions of sex, especially those referencing sexually transmitted infections (STIs) and the need for protection, are of young people. This topic, however, must quickly become part of our national discourse on aging in order to keep older adults healthy.

Many older adults, especially those who have experienced divorce or the death of a partner, don't perceive themselves to be at risk for infections like HIV. Women past child-bearing age often don't think they need to use protection during sex, since pregnancy is no longer a concern. Doctors rarely ask older adults about their sexual health or activity, and gay men are especially unlikely to discuss sexual activity with a doctor. In New York City, half of all men over 50 who were diagnosed with HIV in 2007 did not report how they became infected. Clearly, there is widespread and dangerous silence about sexual activity and HIV amongst older adults.

According to the most recent Centers for Disease Control and Prevention (CDC) estimate, by 2015, more than half of all people living with HIV in the U.S. will be over 50 years of age. This projection is partly due to the scientific advances in treatment that allow those living with HIV to live longer, healthier lives. However, it is also due to the number of new HIV infections among people aged 50 or older. What is most troubling about this trend is that the likelihood that someone will be "dually diagnosed" with AIDS at the time of their HIV diagnosis rises dramaticallywith age. This means that people may be living longer and unknowingly HIV-positive. This is concerning from both an individual's treatment and a public health perspective.

Unfortunately, little medical expertise exists on HIV and aging. Physicians with an expertise in both geriatrics and HIV are extremely rare, and the geriatric infrastructure in the U.S. is wholly unprepared to face this epidemic. There is almost no federal research on how HIV treatment affects aging bodies, or the modes of HIV transmission amongst people over 50. No CDC-supported prevention model for older adults currently exists, nor does a federal testing campaign. The necessary HIV prevention conversations may be uncomfortable for some, and HIV stigma may deter older adults from testing. Nonetheless, these initiatives are desperately needed.

The lack of knowledge about HIV in geriatric care has led to extensive discrimination. In 2009, an assisted living facility in Little Rock, Ark. evicted a 70-year-old retired professor and minister, Dr. Robert Franke. Although this facility, Fox Ridge, advertised "round-the-clock care" for its residents, this promise rang hollow for Dr. Franke. After a lengthy paperwork process to describe his medical history, Dr. Franke moved into the facility from Michigan, hoping to finally live nearer to his daughter. The next day, when Fox Ridge staff noticed in his paperwork that he was HIV-positive, he was asked to leave. A lawsuit helped by Lambda Legal eventually settled out of court in September 2010, but the case raised awareness about the needs of older adults living with HIV. Dr. Franke and his daughter, Sara Bowling, were recognized for their fight against HIV discrimination and spoke about their experiences at an October 2010 White House meeting on HIV and aging. Slowly, thanks to advocates like the Frankes, this long-ignored public health issue is being addressed. But there is still much that needs to be done before HIV-positive elders receive the full care and attention they deserve.

The CDC can spearhead efforts for better care and prevention by collecting data on HIV amongst older adults, the effects of HIV treatment on aging, and the prevalence of HIV in gay and bisexual men and transgender women over 50. This research could inform a CDC prevention campaign, part of which should be a social marketing campaign to end HIV stigma and anti-gay stigma in nursing homes and senior centers. As part of this effort, staff at nursing homes and senior centers should be thoroughly educated in the unique needs of older adults living with HIV, particularly those who identify as LGBT. Doctors should also be encouraged to talk to their patients over 50 about sexual health and activity, making it clear that those conversations are confidential. As uncomfortable as it may be, medical providers have to embrace that their older patients are having sex.

Congress can play a crucial role in implementing these programs through the reauthorization of the Older Americans Act (OAA). This piece of legislation allocates funding "for community planning and social services, research and development projects, and personnel training in the field of aging." The OAA must be reauthorized in 2011 for implementation in 2012, and Congress could include funding to address HIV care and prevention services. The OAA could also include LGBT elders and those living with HIV as "populations of greatest social need" for more targeted programming. As the epidemic changes, our federal response must adapt.

Wednesday, September 7, 2011

I was diagnosed with HIV in July 1992. Before starting HIV treatment, my T cells were 868 and I was in great shape, but I was angry at myself for trusting my husband and not wearing protection. I thought I was going to die, and I looked at my life from a different point of view. I started to hang out and drink. I didn't keep a good health regimen. That was the most ignorant decision I ever made. Due to that choice, my T cells went down to 0. I got tuberculosis, neuropathy, wasting syndrome, and had Pneumocystis pneumonia (PCP) four times.

I've dealt with many challenges: drug abuse; alcoholism; domestic violence, psychological and physical (coming from a dysfunctional family where my dad, an alcoholic, always beat my mom, I've had boyfriends and girlfriends who used to hit me); no support system; and all the stigma. I buried my sister and two brothers; I lost all three of them to AIDS. I lost my mom to breast cancer. I felt alone. I run into many people who feel the same. But you know what? All these obstacles helped me get stronger and always come out on top.

My doctor started giving me many different meds until I found one, or five, that worked. When I started taking medications I did not adhere to my dose (another stupid choice ... it's difficult since you're not accustomed to taking so many pills daily). I became "MDR," which stands for multiple drug resistance. It was very difficult; I was angry at myself for not adhering to the medication. I had to wait for a clinical trial that fit my criteria in order to participate (that experience was a horror, since you feel like you're running out of time). I do want to say that HIV treatment has allowed me to live longer. I have been taking Epzicom (abacavir/3TC, Kivexa), Intelence (etravirine), Isentress (raltegravir), Norvir (ritonavir) and Prezista (darunavir) for the past two years and I would not change anything. They have helped me live a well-adjusted life.

My son was 9 years old when I was diagnosed, but I didn't disclose to him until he was 12 years old since I didn't want my condition to interfere with his school work. I wanted him to concentrate on going to school and pursuing college. I did not want to leave him alone. Today he's 27 years old; he graduated with a bachelor's degree and has a great job in the financial sector on Wall Street. He is happy to see that I'm still alive. He has his own apartment, car, a great circle of friends, and he travels a lot. We go out to many places together and celebrate life; we just celebrated July 4th in the Poconos.

I raised my son with great values. He doesn't do drugs or alcohol, or smoke cigarettes. I'm so proud of him; my circle of friends and family are always telling me he's such a good son. He is my greatest support system; he inspired me to do what I do today. He used to tell me a lot of times, "Mom, why don't you go out there and do something -- rather than complain about it?" So I took his advice! I changed my lifestyle, went to school, got a job, and now I love helping others empower themselves. I have done everything I wanted to do prior to getting the virus. I have gone on a vacation, on a cruise, horseback riding, and in August I'm going away again.

I have received awards for what I do, and hope to God I can help end this epidemic and get people to listen and practice safer sex, to keep as many as possible from getting infected.

I would advise people just starting HIV treatment to seek help in maintaining a healthy lifestyle. Seek a support system. Attend groups, listen to what others are saying about their experiences, ask for suggestions, ask questions, be very curious about the different types of medications and their side effects. Ask your doctor to help you find the medication that will work with your lifestyle (for example, if you're active and always on the go, get a medication that's taken once daily). Take into consideration what will work for you.

Reevaluate your priorities: What is important to you? Living a healthy life? Hiding and living in denial for the rest of your life? Do you want to be happy or do you just want to make others happy? It's all about you; you are living with a virus that can be easily controlled but you need to make the correct choices; seek help in making these choices.

I hope I can help others make a wise choice, and a healthy one. AIDS is not a disease; it's an adjustable lifestyle that can work for you if you make it work.

Lillibeth Gonzalez works as a peer health educator at Gay Men's Health Crisis, Inc. (GMHC), one of the world's first and largest providers of HIV/AIDS prevention, care and advocacy.